It’s a beautiful day in the neighborhood. I’ve spent the last few nights reading from an old book by Paul Monette called Borrowed Time. This is one of the first books I read after I was diagnosed because I thought it had wisdom that I needed to know about going into the rest of my life.
In this latest reading, I was struck by the insanity of it all and the crazy manic attitude Paul had towards his partner who had been diagnosed, gotten sick and eventually died. Surrounding them was a circle of men who were sick, in the time when AIDS was a death sentance and that words were not spoken, taboos were kept and superstitions obeyed. I have to tell you that it was really painful to read this text once again, living in the time that I live today, having survived.
I know that my generation came years after the first waves of AIDS in the early eighties. I was a 90’s kind of boy. Although we had our problems, they were not as bad as the former age. I don’t know if I am feeling a bit of survivors remorse or that I understand the past in certain terms. By the time I came along, AZT was the first drug of choice. Living under the careful watch of my keepers and always having that timer in my pocket that went off every few hours reminding me to take my AZT. What a horrible drug that was. But everyone I knew was on it when I got it. We all carried our little timers in our pockets, slipping pills out now and then as required.
I can remember thinking over the past few nights, that I don’t remember being that manic. I guess that Todd kept me on a very short leash and I did not have the time or the opportunity to get manic. Although I remember many of my friends had KS and were really sick. I was sober during this time of my life and I remember how demoralizing it was for some of my friends not being able to go out in public without their diapers or being fully covered up from head to toe because they had so many lesions on their bodies and it was a terrible sight for those who would see us. My memory of that time is limited to the community that I belonged to. So many men were sick, so many of my friends did die. The Quilt is my connection to those men, I have shown you all pictures of that quilt over the last few months.
Is it guilt that I feel that I survived and so many did not?
It is remarked that I should start with a little gratitude. And I do have an incredible amount of gratitude because When I came into my illness there were people there who gave me medical assistance. In those days you either had PCP or you had KS. In the beginning it was PCP that took me down after a long bought with hepatitis. I believe that it was within my experience of hepatitis that my body sero-converted. I was so terribly sick for a long period of time. I was given the “List” of warning signs that, if you started having these issues going on that you might have HIV.This is the list of issues that I was watching like a hawk:
Most people who contract HIV remain symptom-free for the first few years. A few suffer a brief period (3 to 14 days) of fever, joint pain, rash, and swollen lymph nodes—the small bean-shaped organs in your neck, jaw, armpits, and groin—within a month of being infected. Later, as the immune system grows weaker, a common group of warning signs may appear, including fevers, night sweats, tiredness, weight loss, coughing, and diarrhea…
I remember over a six month period of time ticking one symptom after another. That would have been between January and July of 1994, the month and year that I was diagnosed. I knew at some point that I was sick, and as the list began to grow, the more I feared knowing the truth. I guess by the time that July of 1994 rolled around, I was ready to go get tested. I had enough knowledge about me that if I was sick that there would be infrastructure set out to help me – like they had helped others. No one thought that they were invincible. Men and boys were dropping like flies. Denial was not something that many of us entertained. Although I did watch some of my friends suffer, those who did not want to say the words to themselves or to their partners and lovers. All of those men died. By some fluke of God, I survived.
AIDS is the deadly disease caused by HIV—an insidious virus that attacks the immune system, weakening the body’s ability to fight off germs and hold back cancer. HIV (short for Human Immunodeficiency Virus) can lurk unnoticed in the body for years, slowly wearing down the immune system until a series of rare and exotic illnesses finally gives its presence away. HIV works by infecting and destroying the white blood cells that serve as the body’s first line of defense against germs. Called T cells (or Helper cells), they mark invading germs for attack and call other immune cells in for the kill. In a healthy person, the T-cell count is normally more than 1,000. A few months after HIV takes hold, it drops to 800 or less. A long, gentle decline follows for a period of years. Finally, with a sudden drop to 200 or less, the full ravages of AIDS begin. In the early stages of infection, the only way to be certain you have HIV (or don’t!) is to take a test. If evidence of the virus is found, you’re said to be “HIV-positive.” The doctor can then prescribe drugs to fight the virus and delay the development of AIDS.
These were the terms of reference back then as they are now. This is the real deal. I have told you the stories about the day I was diagnosed, what the doctors told me at that point. I have shared with you the hysteria that I felt knowing that I had more or less 18 months to get my life in order and that I was going to die. Because that’s the way AIDS was even in the nineties.
After reading Borrowed Time once again, I can see the disconnect that I had between the generation before us and them. We had come into a time when AIDS medications were starting to make their mark on the scientific front. By the time I hit Miami a year after I was diagnosed, there were enough drugs on the market that we started radical and heavy drug treatment. I had found a doctor who was going to save me and he would die trying to save every patient that walked through his office doors.
We were testing drugs in any way possible. Things were happening very quickly and time was of the essence. There was no time to waste. During those first few years we did not have genotype and phenotype, that came much later, but it did come. These are the tests that are done to figure out how one will either react or not react to available medications on the market. Unlike the men of the past, who did not even have these kids of assistance available to them, we eventually did.
What could we do? There was no choice but to take what doctors had at their disposal, and hope for the best, which is how we began. I remember that the drugs were hard, and that I was very sick all the time. Those first few years of AIDS were terrible. But my doctor warned me of everything that I could possibly experience, and I was encouraged highly to push through the side effects and to help myself by staying as far ahead of the wave as I could stand.
If there was any hope of survival, you took the pills that were given to you and you “Pushed Through” whatever side effects came at you. Because if you can push through and get to the other side, then the life of that drug in your system would hopefully make a difference. Dr. Juan knew that he was going to save some lives, he believed that if we took a multi-pronged approach to treatment that he could save lives. Aside from the medications that we would take over the years, they would add Vitamin C drips, Immunoglobulin and B12 drips. During those years of trial and error, there were no half measures. You either went whole hog, or you did not go at all. If you wanted to live, you submitted to whatever treatment plan your doctor had available. I chose to Push Through.
I would take my pills every day like clockwork. But I also remember how hard it was in the beginning. Thank God I had a group of friends who were always there for me to help me, to drive me to appointments, to come and clean my house, to cook for me and to make sure that I was not alone during the low points.
I think that I survived because the medical team that took care of me stopped at nothing to make sure that all of us in this treatment circle had all the latest medical information, drugs and treatment options available to us. Unlike not having any answers to the what and the why, and the not knowing, we at least, had options to consider.
Moving from Ft. Lauderdale and the insanity of death to Miami, was the best decision that I could have made for myself. Because in Miami I fell into this treatment circle through the Mercy Hospital Immunodeficiency clinic. There was comprehensive assistance across the board. This is something that earlier generations did not have. We at least, by then, knew what we were dealing with. There were names for opportunistic infections, we learned what they were, how they were caused, and what treatments were used to counteract them and in the end even prevent them from occurring.
There was an ordered and methodical approach to treatment. In Paul’s day, one was grasping at straws trying to figure out what was going on, nobody knew then, what we knew so few years later. All the medical information collected in San Francisco, Los Angeles, New York and Philadelphia was put to good use. We studied every case history. We sorted through pages and pages of medical information. We studied every drug that was on the market and if those drugs showed promise then we would get them.
I don’t know, maybe I have taken for granted the fact that I did not live through that harried existence of “not knowing” although we had our own “not knowing” too. Drugs were being rolled off the production lines and as they became available, we took them, lock, stock and barrel. There was nobody before us testing them amongst themselves. WE, were the test patients and if it happened that those drugs failed, we were going to die.
It was good for me to be where I was because I did not watch men die right and left as I had witnessed while I was living in Ft. Lauderdale. There was a difference in our treatment circle. Because we were going to live, we were going to defy the odds, we would not be the ones dying any more. Ft. Lauderdale was a scene of terrible sickness and death, terrible suffering and pain. I am really grateful that I did live through that. Because I must tell you that having lived through the depth of suffering and pain that I had, only made my desire to live stronger. I had good teachers. I had good men and women who helped me live.
The doctors today tell me that my virus is unique. That it [the viral strain] is one of the most resistant strains of HIV to conventional medication, yet the meds that I am taking do work, I am still alive. Like my former counterparts, when they said that you either get PCP or KS, when my friends all had the KS strain, I was the one to suffer PCP pneumonia. I had it more than once. And each time I almost died.
There was so much uncertainty to AIDS in the eighties that I cannot imagine how I would have survived had I been one of the first few generations of people with AIDS. I just don’t know how I would have survived such insanity and sickness. I can tell you that I did have my share of sickness. It is all like a blur to me now, those first few years, I fought for many years just to survive. There was not a whole lot of time to ponder the thought of death. I was always busy, my mind was kept occupied engaged in “Survival Mode.”
The problem we had at that time was the government. When I was first diagnosed I had applied for government disability assistance, and even back then it was often impossible to convince the government to help you, when all the government wanted was for you to die, to ease up on excess sick population. It took me three attempts to get disability assistance. I cannot imagine what the process is like today, AIDS was a totally different beast than it is today.
Imagine for a moment that You have just found out you are sick and that you are going to die and that there are not many drug options for you at this point, and you have to figure out how you are going to pay for the medications that you need and how are you going to pay your rent when your employers were firing people left and right and landlords were throwing sick people onto the streets. The government is sitting there denying claims left and right because if they decide that you were going to get disability, that you better be on deaths doorstep to get it. Many of my friends died waiting for assistance. For many years the governement gave people the “fuck you heave ho!”
I had to practically commit suicide for the government to finally agree to grant me disability. I had to make sure that I was terribly sick to death, I had PCP, I had to stop taking my medication and not bathe for a week, stop eating and waste away to something that I cannot imagine that I did in the end. But I did it, I remember walking into the disability office hacking and coughing on some woman’s desk practically wreaking of AIDS before she would sign my form and push through my application. It was really sick the lengths one had to go through to get formal government assistance.
RATHER YOU DIE, THEN US INSURING SOMEONE WHO WOULD EVENTUALLY DIE AND RID THE WORLD OF EXCESS POPULATION.
How very Ebenezer Scrooge…
Have I moved from the boy I was to the man I am? Has that much time passed that I have forgotten what it was truly like, what happened and what it is like now. I think it has. More than a decade has passed and times have changed. We are not dying like they were, we are not suffering like they were. There are many more treatment options on the table than there were just a mere ten years ago. Death is not as imminent as it was just a few short years ago.
The thought of death became less and less, the more years/distance one puts between you and it. Life has certainly changed in the last eight years. I have changed over the last eight years. The face of AIDS has changed over the last ten years. I don’t really think about dying – like those men who were suffering in the beginning of the scourge of AIDS did.
The longer I live, the less I stress over dying. I stay out of my head, I don’t entertain the manic waiting to die mentality. I’ve grown into the man I am because of what I lived through and am able to tell the tale. I just found reading Borrowed Time this time to be so distant from how I live my life today. I found myself getting ancy reading the pages, I also found that life back then was so different than it is today. We still don’t know things. We still test medication, but we are living longer more productive lives. if you told me then that I would end up being here today, I would have laughed you off the boat.
There is so much wealth in lived experience. I have survived hell. And I lived to tell the tale. All of the history you need to read is here in the PAGES. I have left you every piece of information that is in my head, that I can remember. This is just another one of those story posts that can be added to the collection of historical stories that have collected on my blog.
I am grateful for life, for air and for all good things.